Most of the people we talked to had alopecia areata, which is often used as an umbrella name for a spectrum (range) of types: areata, totalis and universalis. Because alopecia areata is a spectrum, many people had hair loss ‘in between’ these named points. Some people found that their alopecia changed along the spectrum over time.
For this project, we didn’t talk to anyone whose alopecia was caused by chemotherapy (cancer treatment). No one described themselves as having androgenetic alopecia (male- and female- pattern balding), which is usually thought of as affecting middle-aged people but not always, or telogen effluvium (general thinning of hair). None of the people we talked to identified themselves as having the subtype of scarring alopecia (when the hair follicles are damaged beyond repair, usually due to another underlying illness). A couple of people initially thought pulling their hair too tightly when styling it had caused their hair to fall out, which is known as traction alopecia. Hannah worried she had pulled her hair out straightening and brushing it “too much” but, “looking back on it, the kind of patterning of it and where they were… They weren’t just kind of like traction alopecia or anything.”
Alopecia areata is a spectrum which is sometimes divided into particular subtypes based on the amount of hair loss and body locations affected:
- Alopecia areata – this was mentioned by a lot of people. It involves patches of hair loss rather than entire areas (e.g. the scalp) being bald. These patches can be anywhere on the body, including the scalp, eye brows, eye lashes, legs and pubic hair. For the people we talked to, it was usually the scalp. Hannah’s diagnosis is of alopecia areata and her scalp has been mostly affected, but she’s also noticed some patches of hair missing on her legs.
- Alopecia totalis – this is when a person loses most or all of the hair on their head (scalp, eyebrows, eyelashes, facial hair), as for Annie Y and Emilie. Lots of people thought that full baldness on the head tended to be misunderstood by others as being due to chemotherapy. Meghan says the thought of her alopecia areata becoming totalis or universalis “scares” her but that she knows it’s a possibility.
- Alopecia universalis – this refers to little to no hair growing anywhere on the body, including the head, arms, legs and pubic area. Danny was born without hair and, although he grew some eyelashes and eyebrows as a toddler, he hasn’t got much hair anywhere else. Ben shaved his head when he had lost about half of his head hair and was continuing to lose more. He had some stubble grow initially but it “gradually disappeared’ as has the hair on other parts of his body.
Some people knew which of these types their hair loss was closest to because doctors had told them or they had learnt about it online; others referred to themselves as having alopecia or alopecia areata in general terms.
The type of alopecia and extent of hair loss was important to some people because of:
- Wigs – some people had seen dermatologists who were reluctant to prescribe them a wig on the NHS (for which there is financial support), especially if their hair loss was considered quite ‘mild’. Those with small patches of hair loss and who had a lot of hair still said it could be tricky to get the wig to fit and ‘sit right’.
- Treatment options – for example, some had been told by their doctors that their hair loss was too much for them to have steroid injections or, as for Michael and his eyebrows, that only individual parts were small enough to try treatment.
- For explanations – having a label of ‘alopecia’ generally or a subtype helped some explain their condition to other people. As Emily said, words like ‘hair loss’ “are generally applied to like, male pattern baldness, and don’t really explain the severity of what I have.”
- Likelihood of regrowth – many had been told by their doctors that a small patch of alopecia areata was likely to regrow. This was the case for some, but others found their alopecia continued and/or became more extensive. More extensive hair loss which continued for a long time was seen as less likely to regrow.